ICT for ageing well:

Transcription

1 ICT for ageing well: Listen to what older persons think! At my age it is very difficult to understand technology And what about the costs? The devices aren t really cheap and they are fast outdated so they need to be replaced again Using the devices drew attention to the fact that I was letting myself get a little bit overweight and now I feel healthier It is good to have someone to talk to, to know someone cares Home Sweet Home February 2014

3 1.Introduction AGE AGE Platform Europe This publication presents the outcomes of a small qualitative study that took place in the frame of the European Union-funded Home Sweet Home project. It aims at shedding the light to barriers and enablers for the acceptance of new technologies that are introduced to help older persons live autonomously and manage better their health. It is written from the perspective of older persons who use technologies in their everyday living and it is addressed to all the stakeholders who are involved in the development and deployment of such solutions: researchers, service providers, industry and SMEs, public authorities, health and social care professionals, informal caregivers, insurers and mutualities and older persons themselves. Instead of discussing elements specific only to the project, the publication is drafted in a way that can be useful to various similar settings and sets of services. First, some basic information about the project and the study is provided. Then the results of the study are summarized as answers to the questions: who are older persons and what matters to them? In the end, recommendations for future research and practice are given, before presenting the case studies (narratives), which were analysed in order to reach conclusions and lessons learned. In the following pages, some abbreviations are frequently used, which are presented in the following table to facilitate the reading: BPM COPD GP HSH IBS ICT Blood pressure meter Chronic obstructive pulmonary disease General practitioner Home Sweet Home project Irritable bowel syndrome Information and Communication Technologies About the Home Sweet Home project The Home Sweet Home (HSH) project brought together a set of services, which aimed at extending the independent life of older persons in their home environment, improving their feeling of safety and proposing digital ways for enhancing their social inclusion. In addition, the HSH services were foreseen to facilitate the management of chronic conditions in a home setting and reduce medical expenses while boosting overall quality of life. This solution was tested in real life trials in four countries: Italy (Latina), Belgium (Antwerp), Ireland (Louth) and Spain (Badalona). The four pilot sites aimed at verifying the impact of the set of services on economic and clinical indicators, its financial sustainability and the satisfaction of users. Using a clinical trial methodology to ensure credible outcomes, HSH attempted to refine the business case in view of a largescale deployment. 3

4 About the technology HSH planned to deploy the following technologies: InTouch: a touch-screen computer including a portal which connects all elements of the Home Sweet Home technology. Its main function is to gather and display all the information and measurements from the HSH services (both medical and environmental). Participants have access to this information on the portal. This computer also integrates a daily planner and a set of cognitive games (see below). Daily Planner: a calendar integrated in the computer of the InTouch, which can serve as a reminder for medical appointments and medication uptake. The interviews did not allow for a thorough evaluation of this service as very few participants referred to it separately. In fact, only the Call Centre could update the Daily Planner, as a result it was essentially unusable. Cognitive games: The games serve as memory training, as well as an entertainment activity for participants. This service is integrated in the computer with the InTouch. Weight Scales: One of the main vital monitors included in the HSH system aiming to monitor the weight of the participants and transferring relevant data to the portal. Blood Pressure Meter (BPM): Another medical measurement tool which serves to monitor blood pressure levels, using an arm band. Pulse oximeter: A pulse oximeter is used to measure a patient s blood-oxygen saturation level and pulse rate. Glucometer: The glucometer is used to monitor sugar levels in the patient s blood. Mambo: A mobile phone with several extra features, such as a built-in GPS and an alarm button. Ello: A technology integrated with the participants TV, allowing having videoconferences with selected contacts. Similar to Skype but on TV. Smoke detector: A sensor which can detect smoke and fires by generating alarms. Water detector: A sensor which can detect water leaks, e.g. in the bathroom when sink or bath overflows. Motion detector: Sensors which can detect falls or abnormal (in)activity and generate related alarms and liaise with a call centre. Temperature/humidity sensors: Sensors which monitor the climate of the living environment. Homatic devices: These are smart home features integrated in the domotic environment, such as doorknobs, windows and radiators, for example to open doors and windows and adjust heating. These services were not implemented in any of the participants homes, as the infrastructure was unsuitable for the installation. Therefore, the qualitative study does not offer any further insights on their utility and acceptance. 4

5 About the Advisory Board Why such a study Experts comprising the HSH Advisory Board observed and had real contact with the older persons and professionals experiencing the HSH technology through visits to the project s pilot sites; they contributed to a number of documents prepared by the HSH consortium providing a critical point of view to the project development, and actively participated in a number of events and dissemination activities. The experts aimed at bridging gaps between research and practice and at highlighting ethical concerns and issues of user acceptance. The work of the Advisory Board was crucial in providing long-term perspectives to the project outcomes. The following people were involved in the Advisory Board, which was managed by AGE Platform Europe, as partner of the HSH consortium: Angela Cluzel, European Association for Directors of Residential Care Homes for the Elderly (E.D.E.) Fausto Felli, Equity in Health Institute, Institute for Quality of Life, Italy Heidrun Mollenkopf, BAGSO, Germany Claus Nielsen, DELTA Business Development, Denmark Marja Pijl, European Association working with Carers (Eurocarers) Philippe Swennen and Blandine Cassou- Mounat, International Association of Mutual Benefit Societies (AIM) Barbro Westerholm, Swedish Association For Senior Citizens, Sweden In view of the small number of participants and the high number of drop-outs in the pilot sites, it would perhaps be methodologically more valid to carry out a few case studies, representing a number of differing typical older persons, giving in-depth background information on their social and economic resources, biography, health status and attitudes. This might better explain why they like to use and adapt to technology or have difficulties to use or even reject it Heidrun Mollenkopf, AGE Expert, HSH Advisory Board Member, on the occasion of the visit to the HSH pilot site in Antwerp, Belgium, December 2012 During the visit of the HSH Advisory Board to the pilot site of Antwerp, Belgium, in December 2012, the experts suggested that undertaking a qualitative analysis would be very interesting in a project like HSH as a way to enrich the statistical data and get a better insight into the personal factors that have affected the users appreciation of the devices used in the pilots, before implementing them on a larger scale. Although such a task was not initially foreseen in the project work programme, the HSH partners agreed on the usefulness of such an additional activity in order 5

6 to harvest experiences and histories of end users and to strengthen the HSH deliverables, results and implementation experiences. This analysis was planned to complement the statistical data shedding light on the background and context in which different users interact with the HSH services, which could be used to extract a list of barriers and/or of facilitators to the take up of technology. The questionnaire used for the interviews was drafted on a voluntary basis by two members of the Advisory Board, Ms Heidrun Mollenkopf and Ms Marja Pijl. Then a small working group was established comprised by the two Advisory Board members and Nena Georgantzi and Ophélie Durand from AGE Platform Europe, in order to guide the study and deliver the expected results. The HSH management team overlooked the work on the qualitative study and was in charge of the communications with the pilot sites. In order to gather variable but also comparable data, pilot sites were requested to select users with diverse characteristics, in terms of e.g. health and social condition, professional background, familiarity with technology and acceptance of devices. Interviews took place between 27th September 2013 and 7th November In total 18 people were interviewed for the qualitative study; five from Antwerp, eight from Badalona and five from Louth. No interviews took place in the pilot site in Latina. Out of the 18 interviews, nine cases were analysed in depth, three from each pilot site. For the selection of these cases the working group identified the most interesting and characteristic cases on the basis of minimal/maximal common ground, which is participants with similar backgrounds but different reactions and participants with different backgrounds and similar answers. The focus was on motives, considerations, feelings, experiences and changes mentioned by interviewees. Attention was also given to present cases from all pilot sites and to attain a relative gender balance. The table below presents the individuals interviewed, highlighting the analysed case studies, which can be found in section 5. Pilot site Sex Age Louth (IE) female 85 female 79 male 80 female 71 male 78 Antwerp (BE) female 91 male 75 male 73 female 87 male 72 Badalona (ES) female 70 female 80 female 72 female 73 female 81 female 86 male 83 female 80 6

7 2. Who are the users? Older people are a totally heterogeneous group and that is a vital point to learn. You have those who continue to decide on their daily living and those who at the same age have given up. You have those who will grasp the remote control and flick through the channels and those who leave it in the drawer preferring to push the button Angela Cluzel, AGE Expert, HSH Advisory Board Member, on the occasion of the AALIANCE Final Conference, Malaga, March 2010 This study has reaffirmed the heterogeneity of the target group and the fact that there is no one-fits-all solution. Nowadays old age can span 30 or 40 years so putting everyone in one same basket is simply not relevant. Not all older people are frail and impaired. Neither is everyone interested in ICT. Personal constraints related to ageing, such as gradual loss of sensory abilities (hearing, eyesight, taste etc.), physical impairments (speech, dexterity, mobility, strength, endurance, etc.) and cognitive and intellectual problems (memory loss, information processing, etc.) impact on the interest and ability to engage with new technologies and the confidence in using them. Older persons may live in private homes, sheltered housing or social flats, alone or with other family members, or in various types of residential or long-term care institutions, or in other assisted living settings. These living arrangements form the context in which services are offered and are very important aspects to its uptake. In addition, the opinion of the family, friends and other people the individual is in contact with and trusts, such as doctors, social workers, or carers, can influence people s feelings towards technology. Personal experiences, like biographical background, health status, familiarity with technology, and expectations are also relevant. If experiences with the service are positive or expectations are confirmed, people are more likely to use technical services in the future. Being approached by people who participants know personally and trust makes a difference. Also, the authority of the contact person, can play a role in participants motivation. For example if the contact person is a doctor, health benefits are likely to be expected. In sum, when innovating and introducing new technologies we should not only think of individuals but of systems: the living, social, political, legal and technological environment of the person has an impact on his/her attitudes. Older persons are not a uniform target group but individuals with diverse needs, wishes and expectations. 7

8 Is there an ideal user? I grow old learning something new every day Solon (c.639bc c.559bc) In this study we tried to identify the profile of the model user of ICT solutions and we made the assumption that the ideal user has experience in technology, likes it and is not startled when things do not work as they should. We moreover found out that people who are not very interested in technology are likely to use the devices once they experience the benefits provided. Besides, familiarity and interest in technologies may facilitate acceptance but do not necessarily mean active use of the devices. In other words, an interest in new technologies does not equal the uptake of services. Some people may just see devices as gadgets. In fact, in this study we have seen technology act both as an enabler and as a bottleneck: for some people, engaging with it is difficult, whereas for others it is the main reason for accepting the solution in the first place (i.e. people who are interested in technical aspects of project). The conclusion arising from these observations is that the openness to learn and adopt new things is essential in the process of introducing new technologies to an older person s home. The pure expectation of health and social benefits often is not a sufficient motivation to accept ICT, unlike what some may think. Even if future generations will be more technology-literate, there will always be tech freaks ready to try anything new and people who have difficulties or do not want to adapt to new media and devices. 8

9 What are older persons experiences and views on technology? I think it s the future of life. Look at the phones...when I was young the phones did not exist and now we are all under control (Male, 83 years old, Badalona) At my age it is very difficult to understand technology (Female, 81 years old, Badalona) Older people are being surpassed by technology and they can t follow it (Male, 72 years old, Antwerp) Some of the other men in the Men s Sheds group have smartphones and they can get all this information on it and I regret not being more knowledgeable about technology (Male, 80 years old, Louth) My family thought it was a great idea since you wouldn t have to go to a nursing home and you can be at home for years (Male, 78 years old, Louth) My daughters made me participate they thought it would be good for me because of the cognitive training (Female, 70 years old, Badalona) I like reading more than using technical devices (Female, 87 years old, Antwerp) I have little interest in technology, but I won t try to avoid it either (Female, 91 years old, Antwerp) The doctor convinced me that it would be good, as I live alone (Female, 81 years old, Badalona) Technology is good, if people are given the equipment at an age where they can learn it, but if someone has problems with their memory, it wouldn t work. Some people are afraid of their life with technology (Female, 71 years old, Louth) 9

10 10 3. What matters to older persons? The main findings of the study are presented in this section under five main questions from the perspective of older users of ICT for ageing well. Do I need it? Smart gadgets aren't enough: we need to use them. We need to roll those ideas out into the real world and start making a difference to people's lives Neelie Kroes, Vice-President of the European Commission responsible for the Digital Agenda, on the occasion of AGE General Assembly, Brussels, May 2013 For half of the participants in the study, the willingness to help others (such as researchers and project staff) and contribute to project objectives was one of the main reasons to take part in the project. Three people mentioned the project goal as a concrete motivating factor, whereas four said that they were curious or just wanted to try something new. Only four participants mentioned expected health improvement as a reason to take up the technology. It is thus obvious that for a large proportion of the participants other motives and external influences were more powerful than a recognised need for ICT-support, even if 11 out of 18 interviewees were suffering from an ailment or chronic illness. Interestingly enough, even people who do not want to keep the devices are willing to recommend it to others. This illustrates the difference between experiencing and understanding the benefits of technology and acknowledging a need and wishing to adopt the service. This is an important finding: the willingness to help the project (altruism) will not appear in real-life situations and will perhaps impose further challenges in user acceptance. Moreover, this sets an important ethical question: such solutions should not be imposed without offering alternatives (i.e. more traditional methods of care and support). More concretely, whereas all the components of the HSH platform that were implemented proved to be relevant in some way, different aspects were useful for every participant. For example, many participants were not interested in the Mambo and preferred to use their own mobile phone. For a few however, the Mambo was the most interesting aspect of the service and the one they would like to keep. Besides, this study showed that duplication of already available services and lack of interoperability hinders acceptance. For instance participants already using a glucometer given by their doctor may be less likely to change to the new one, especially if their doctor does not accept measurements from the provided device (i.e. the participant would have to use two devices). Moreover, duplication can create confusion and stress as different devices may give different measurements. Tele-health solutions are likely to have more of an added value to older persons who live alone, without access to similar health and tele-monitoring services available. They seem less important for persons who are in regular direct contact with a doctor or nurse anyhow or those who live in sheltered housing. In addition, some users experience interesting side effects thanks to the exposure to new technologies: interest

11 to start computer classes, benefit from the internet for other purposes, more frequent contact with staff or family to help with technical problems or difficulties to use the devices, use of the teleconference system to facilitate contacts with family and friends living away etc. In fact, when the project ends, many people will not miss the technologies; instead, they will miss the chats with the people who call and visit to collect data and demonstrate the devices. All these expected and/or experienced benefits are unrelated to health-related needs. The social component should not be neglected. These observations confirm the need to tailor the solutions to the specific needs, expectations, lifestyle, preferences and routines of the individual in order to avoid duplication and ensure that the offered services are used by the consumer. It would therefore be safe to conclude that the study builds a strong case for a personalised set of services. I was hoping not to get the devices (i.e. be involved in the control group instead of the study group) since I didn t feel the need for them I live in a sheltered housing and only have to press a button to have someone up here in 5 minutes, which is a big difference with the Mambo, where they first start to ask questions and it takes much longer before somebody will arrive to help you (Female, 87 years old, Antwerp) I will miss the project terrible when it s finished, I had the equipment for so long now (Female, 85 years old, Louth) I can do without the healthcare technologies and wouldn t miss the end of it... My bloods are closely monitored by the doctor so the devices aren t as necessary for me. I would miss the visits and the calls however (Female, 79 years old, Louth) I will definitely miss the internet and knowing that there is somebody on the other side, because it s nice to know (Female, 71 years old, Louth) The technology can be helpful, especially to doctors to take care of patients (Female, 86 years old, Badalona) I will miss the chats with those who called when looking after the equipment (Male, 78 years old, Louth) I will miss part of the games and the questions...they entertain me (Female, 81 years old, Badalona) I don t use the Mambo at all, even though I like it, since I don t leave the house (Male, 83 years old, Badalona) I m going to miss the scales and the blood pressure meter because I find them useful so I can follow up the values and give the values to my GP (Male, 73 years old, Antwerp) I will miss the control of these cameras in case I fall when I am alone at home (Female, 80 years old, Badalona) I cannot wait to take them (i.e. the devices) out. There are many obstacles, many cables, many devices and in any case I don t use them (Female, 70 years old, Badalona) 11

12 Can I use it? In a society driven by new technologies, it is essential to make sure new applications are accessible to all, in order to avoid increasing the digital divide and the social exclusion of the most vulnerable groups of the population they have to carry out the various actions, as capacity to understand is one thing and capacity to memorize is another. This is important for users to engage with and gain confidence in the services. User-friendliness and accessibility should be at the heart of innovation. Although future generations will be more ICT-literate, as technology evolves, there will always be older persons less confident about their physical and mental capacities and more hesitant to learn new skills and adapt to new media. 12 Anne-Sophie Parent, AGE Secretary General, on the occasion of the Vodafone Smart Accessibility Awards, December 2011 People involved in the HSH trials have encountered various difficulties in using the devices provided, due to their complexity, lack of accessibility or users little familiarity with new technologies. Luckily in the frame of the project training was provided in the beginning of the trials and follow-up demonstrations took place until participants were able to use the devices on their own. But even then, support was needed because technology was not working well, because participants could not open the battery compartment or because they failed to take their measurements. Intervention by the staff or help by members of the family was common in all pilot sites. The study confirmed that implementing technologies has to be accompanied by social services, ongoing training, and long-term technical support. Such support should be an integral part of the package offered. It is important to explain to users both how to use the equipment and why I only use the devices when my daughters come to visit, once a week (Female, 70 years old, Badalona) In case of defect or flat batteries I can call the occupational therapist (Male, 75 years old, Antwerp) The blood-pressure meter is difficult to place in the arm (Male, 83 years old, Badalona) In the beginning I was anxious about the equipment and about using it. But with practice and demonstrations I got used to it and now I feel more confident although it took a while in the beginning to get used to it. It needed trial and error: Just fiddle around with it and find the right way to work [the devices]" (Female, 79 years old, Louth) I use the scales every day; they are not difficult to use so I can do it on my own (Male, 73 years old, Antwerp) The Mambo is heavy and instead I use my mobile phone (Female, 72 years old, Badalona) In the beginning I referred to the manual to figure out how to use some of the devices, but practice makes perfect" (Female, 85 years old, Louth)

13 Can I trust it? Many older people do not have someone in their social network that is able to help them with the installation of new equipment, teach them the necessary skills and help them when they have problems. Older people looking for assistance can easily fall in the hands of crooks: people who do not know what they are doing or who charge unnecessarily high fees. If you have had bad experiences and have no trustworthy person to help you this can be a barrier to the use of ICT" Relying on new machines that older persons do not understand and that they do not trust 100% makes them feel unsafe, especially since serious health conditions add tremendously to their feeling of insecurity. Older persons want to be sure that they can get immediate help and that they can reach medical staff in case of an emergency. They wish to have backup plans and support in case technology does not work. Unconfirmed expectations and confusing outcomes can create frustration and barriers to acceptance. Trusting the service offered is a process that takes time and effort. Testing the devices for some time before adopting them, allows older persons to experience the benefits of technologies can help them gain confidence in using and start liking them. Marja Pijl, AGE Expert, HSH Advisory Board Member, on the occasion of the AAL Forum, Odense, September 2010 The study showed that technology which is performing poorly or encounters many failures cannot be expected to be accepted by older persons. The equipment must be thoroughly tested and completely reliable before it is given to older persons. I used the glucometer for a while but returned it shortly after as it was not giving the same readings as my old one (Female, 85 years old, Louth) I thought it was a pity that the blood pressure meter did not work anymore and had to be replaced but in a trial project you expect such a thing (Male, 73 years old, Antwerp) I never had to use the Mambo, but it is always plugged in. In the beginning I used to test it by pushing the button... I do not really like it; I am afraid some of the grandkids could come in and push the button, putting out an SOS! (Female, 85 years old, Louth) 13

14 14 At first I thought that I could not use the equipment at all, but now after all this time I have lost the fear (Female, 72 years old, Badalona) When the blood pressure meter wasn t working properly, it was no bother at all because the nurse would take my blood pressure regularly anyway (Female, 79 years old, Louth) The values weren t stable; I am disappointed it has never worked correctly (Male, 72 years old, Antwerp) I don t like the fire alarm because it sounds at all hours. I had to put a cloth because it whistled all the time I don t want to disturb my neighbours and I get nervous when it rings (Female, 72 years old, Badalona) Can I afford it? My life has changed since I became a pensioner. My total monthly resources amount to 600 euros. I live near the city centre and a housing allowance covers my rent. My resources do not allow me to do what I want Personal testimony by Ms. Maryse Martin for AGE publication Older people also suffer because of the crisis, November 2012 Willingness to keep the devices provided in a project does not necessarily mean willingness to pay for it in real life conditions. Many of the participants involved in the study (10 out of 18), would not be willing to pay for the equipment whereas for those answering yes, the willingness to pay would depend primarily on the price. Most participants in Badalona (7 out of 8) are not willing to pay anything. The main reasons for this are that they see no need, they do not use the devices or they do not have enough money. The study reveals that cost remains one of the most important reasons of the divide. Buying the basic equipment is one side of the coin; the costs for the installation, the maintenance, internet access and energy consumption, the emergency support and the other services offered are hidden barriers to the uptake of technologies beyond the lifetime of the project. Although there is insufficient analysis of the economic aspects of the project, it appears unlikely that users would pay for the totality of the costs incurred for the service offered. Besides the quite high levels of poverty amongst older people in need of care, another reason for this may be the expectation for such services to be covered by the social protection system. Affordability and repartition of costs among the individual, the state and the private sector should be central in the debate about wider deployment of such services.

15 How will it change my life? It depends on how much it would be. I live alone, I only have the pension and no other income at all, and I also have to pay all the bills. I would be willing to pay 10 a month for it, but I would have to give up something to continue keeping the service (Female, 85 years old, Louth) Of course I would not pay for it, I am a pensioner (Female, 70 years old, Badalona) And what about the costs? The devices aren t really cheap and they are fast outdated so they need to be replaced again (Female, 87 years old, Antwerp) I do not think I would be able to afford it because I have to pay for a lot of prescription tablets and I have to get my bloods done regularly; on top of this I live alone and I have to pay the heat, light, phone, gas, etc. bills myself (Female, 79 years old, Louth) I like technology, but you see I am so old to buy this kind of things (Female, 81 years old, Badalona) It is possible to install gadgets, gizmos, call them what you like that can monitor blood pressure, heart rate, sugar content all quickly and discretely, and relay that information miles away on a regular basis to doctor s surgeries or other medical establishments. One can monitor habits and movement. The question is how good is all that? Is it Inclusion or Intrusion? Peter Rayner, AGE Expert, on the occasion of the Housing Adaptations Scotland Conference, Glasgow, June 2013 An important part of the study was dedicated to changes that participants noticed during the installation of the devices in their homes: personally, in their environment, in their routines and in their relationships with others. The study showed that the provided services can help some people become more health-aware and active, improve their quality of life or increase their feeling of safety. Nevertheless, not all users experienced such positive changes. According to the answers received, the aspect where participants are more likely to see a change is in their feelings. In most of these cases, feelings changed in a positive way, as participants feel safer, more relaxed, better health-wise, more confident in the use of devices or convinced about 15

16 their usefulness. Whereas no considerable changes with family relations were noticed, some participants mentioned that their family members now felt more reassured, and in two cases there was an increased contact either to help with the use of devices or thanks to the internet connection. Additionally, the questionnaires revealed that the introduction of technology may include important environmental changes in a person s home, which the user is not always willing to accept, regardless of the expected benefits. Indeed aesthetics play an important role for some participants who for example do not like the wiring or the space taken over by the equipment. Besides, even if technology can make some things easier, attention should be given not to create extra barriers or burden to older persons stigmatising them as dependent and frail individuals, asking them to adapt their everyday living or take risks, for example compromising their privacy. Research on the ground is helpful to understand older persons everyday problems and respect their routines. services were foreseen as an alternative to regular medical visits and increased health care costs, the more the visits and calls by the staff (in particular to deal with technical problems) the happier the participants were. Moreover, while health consciousness in this study was cited as a positive outcome, there may be an inherent risk for rejection of the solution if the service becomes too medicalised and users are not willing to be confronted with their problems every day. This important ethical issue remains yet to be explored. Last, there is insufficient evidence on how far ICT can help the most vulnerable and frail older persons, such as persons suffering from depression or dementia. 16 One of the most interesting findings is that, in the question which relates to the main changes noticed throughout the project, the most commonly cited change is the increased contact with the project team (five out 18 participants). This appears to be important for participants, not only with respect to the services offered but also in terms of social contact, in particular to combat loneliness and feel more secure when living alone. Some participants will miss the contact with professionals when the project ends and others even fear the loss of human contacts because of the introduction of ICT. These observations are very important as they disprove the assumption that the deployed ICT solutions can improve the social inclusion of older persons. At the same time we have witnessed a paradox: although the HSH

17 Using the devices drew attention to the fact that I was letting myself get a little bit overweight and now I feel healthier monitoring my own health and weight with the BPM and scales (Male, 80 years old, Louth) I live alone and now I feel safer at night having the mambo to contact someone if I need it (Female, 79 years old, Louth) At first I was very angry and I was going to leave. The cleaning lady could not clean because all the wires were in the way. I called the doctor and the technician and they came and fixed it, but I was still going to leave. My daughters did not want me to, but I could not bear all these wires, because the cleaning lady did not clean as she didn t want to move the equipment (Female, 70 years old, Badalona) It s like those little gifts that you receive from somebody and that you can t put away but that you find terribly ugly (Female, 87 years old, Antwerp) I feel good about the changes because I knew that my blood pressure was up, but now when I can take it myself and it is normal, it makes me come down the stairs in good humour (Female, 85 years old, Louth) The main change was the visits by the project team, which is good because I am alone a lot of time. Besides, now I feel more secure because sometimes they call me to know how I am (Male, 83 years old, Badalona) "It didn t really make a big impact on my life, or what I was doing, because as you can see I m very active anyway" (Male, 80 years old, Louth) It is good to have someone to talk to, to know someone cares (Female, 71 years old, Louth) 17

18 4.Conclusions and recommendations The experience of the qualitative analysis in the frame of the Home Sweet Home project has generated the following conclusions and recommendations about the development and deployment of technological solutions for older persons. Regarding future research: Foresee both quantitative and qualitative analysis as both methodologies provide particular insights. Sufficient time and resources should be allocated to enable making links between the two. Expert groups (such as the Advisory Board of HSH) should have an important role in future research projects about reading, reviewing and ensuring synergies between different deliverables. Include interviews with the staff of the trials to gain insights on the challenges they face regarding their acceptance of technologies and make links with answers provided by participants. Document in detail what has changed in the course of the project, in particular, how has user involvement, advice by experts or lessons learned changed the development of the technologies and services. Explore whether assistive technologies are imposing a medicalised lifestyle to participants. Research how (far) technology can help the most vulnerable older persons: those socially excluded, suffering from dementia or depression. Regarding technological innovation Develop sets of solutions that can be tailored to the needs, expectations, lifestyle, preferences and routines of the individual. Observe how and where people live to avoid developing solutions that cannot be used in real-life situations. Ensure that solutions are reliable before exposing them to users. Make solutions robust, attractive and practical, taking due account of energy provision and challenges related to change of batteries. Opt for mainstream solutions, integrated as far as possible to a single device. For health and safety-related devices a back-up should be available in case technology fails. Affordability should be at the centre of technological innovation for older persons. Regarding financing Although many of these technologies were conceived to reduce the need for personal contact with carers and health professionals, the study has shown that users highly appreciate the contact with the staff involved in the trials. Perhaps these technologies would be more acceptable as a tool to improve the work of health professionals and the quality of life of older persons, rather than a way to save on resources. Further analysis is needed. The quite low willingness to pay shows that an individualization of the cost is probably not the way forward. Different financing models should be explored. Costs for training, technical support and maintenance should be part of the package. 18

19 5. Case studies The case studies aim to provide insights on different types of users, taking into account their background, experiences, social context, health status and living environment. The objective is not to generate generally applicable conclusions the small number of cases does not allow for generalisation but rather to highlight some important aspects, which should not be overlooked in future projects and wider deployment of relevant services. This is why they provide observations and not conclusions. Nevertheless, based on the analysis of the case studies, the overall synthesis of the interviews and the experience of the Advisory Board during the pilot site visits, this publication presents some lessons learned and recommendations, as presented in the previous section. While the same structure was applied to all these case "stories", they were drafted by different people, which explains the different writing style. Naturally, for data protection and privacy purposes the names chosen for the case study participants are pseudonyms. Case Study 1: Ms Maria Garcia (Badalona) Ms Garcia is 70 years old and widowed. Although one of her daughters came to live with her in March 2013 (after the beginning of the project), Ms Garcia spends most of the day on her own. She lives in a flat on the 8th floor in an urban area with easy access to shops and services. She has completed primary education and has no previous interest or experience in technologies. Ms Garcia suffers from COPD, is treated by a psychiatrist for depression and is also in close contact with several specialists. She feels bad about her current situation and discouraged to do anything to change it. She mentions: I cannot go outside. I choke when I take two steps. Also, I've gained weight. And that does not help me. But I do nothing during the day. I'm home all day watching TV... and eating My daughters do not want me to do that, they want me to take a walk, go on a diet,... but I have no encouragement. Ms Garcia was not interested in the project, neither in new technologies and therefore lacked personal motivation to join the trial. You know I did not want to participate My daughters made me join, she mentions. She explains that her daughters were interested in the devices and thought it would be good for their mother, especially the cognitive training. Using the devices Ms Garcia is not an active user of the devices; she never uses the Mambo, Ello and the daily planner and she almost never uses the weight scale. I do not know what my weight is, she mentions. Moreover, she only uses the blood-pressure meter when her daughters are around, who are able to help her then. She likes this device because it allows her to keep a record of the measurements. She also likes the pulse oximeter, which she uses every time she chokes. It works better than the one I have, she says. Once there was a problem with its function and she called the doctor, but at the end only the batteries needed to be changed. It did not disturb her when it did not work, as she was still able to use her own. Ms Garcia also likes the cognitive games and uses them without help. However, I used them at first, but now I do not play much because I get tired they are always the same, repeating, she added. Ms Garcia likes all the devices that do not ask for active use by the participant, with the exception of the smoke detector, which 19

20 20 had to be relocated as it initiated false alarms when it was in the kitchen. In general, in case of failures, Ms Garcia contacts either the team or her daughters. Changes resulting from the implementation Ms Garcia was hoping that the devices would help her improve her health but she has not seen any improvements. The only changes she has noticed are in her apartment. She is very annoyed by the wiring of the devices: At first I was very angry and I was going to leave. The cleaning lady could not clean because all the wires were in the way. I called the Doctor and Jordi and they came and fix it, but I was still going to leave. My daughters did not want me to, but I could not bear all these wires, because the cleaning lady did not clean because she didn t want to move the equipment. She also mentions that her daughters now insist more on health care but not regarding the equipment, in general, in my life. The future after the end of the project Ms Garcia will not miss the devices. I cannot wait to take them out, she says, since there are many obstacles, many cables, many devices and in any case I don t use them. She is not willing to pay for the devices. Of course not. I am a pensioner. I would not pay for them, she mentions. Overall, she thinks that technology is good and it could help others with health problems, as long as people use it and have somewhere to put all devices and cables. But, I'm too old and do not want problems or headaches Observations Related to project planning: - This case shows that when personal motivation is lacking, engagement of participants can be challenging. Related to the uptake of technologies and services: - While Ms Garcia seems to understand the benefits of technology she does not actively use it. - Changes in the environment impact on the acceptance of technologies. Related to older persons: - Introducing technology to Ms Garcia has not helped her to cope with depression, inactivity and health problems. - The case of Ms Garcia confirms studies which suggest that previous attitudes (psychological aspects) play an important role in the uptake of technology. Related to real life conditions: - Ms Garcia has no interest in keeping the devices beyond the lifetime of the project and is not willing to pay for them. - Ms Garcia is very disturbed by the wires. Case Study 2: Ms Rosario Morales (Badalona) Ms Morales is 72 years old and widowed. She is living alone in an apartment on the 8th floor of a building with lift, situated in an area with many shops and easy access to services. She completed primary education and has been a housewife. Ms Morales shows a considerable interest in technology and she already uses a PC and a mobile phone. She is not suffering from any chronic illness or ailment, but she is on the list for bunion surgery. Luckily her condition does not mean any restriction to her, although her feet hurt and she is increasingly doing fewer things. Some days I am better, other worse, but not much has changed recently, she mentions. She loves to sing in a choral and this is a motivation to keep on being active. She decided to take part in the project in order to collaborate with the medical staff in the study. She told her son about it, and he seemed fine. Her son lives in Barcelona and does not visit often.

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